Biography

Since completing her residency training under the mentorship of Drs. Robert Joynt and Berch Griggs, she has focused her career on the neuromuscular disorders of childhood.  For the past two decades, Dr. Susan Iannaccone has worked on management protocols and outcome measures for the most common disorders: spinal muscular atrophy (SMA) and Duchenne muscular dystrophy (DMD). She was the PI and leader for an NIH sponsored clinical trials group, AmSMART from 2000 through 2008. With NIH funding, the group established for the first time reliability and validity for outcome measures in the young spinal muscular atrophy (SMA) population. Current trials in pediatric SMA use many of the principles they established in AmSMART. She was a member of the Outcomes Committee for the International Coordinating Committee for SMA that completed Rasch analysis for motor function outcomes in SMA. This international project made great progress toward validating a single tool to be used as motor function outcome in this population. Currently, she is site-PI for more than half a dozen clinical trials in SMA and DMD.

Dr. Iannaccone is Co-Investigator for the UT Southwestern NeuroNEXT grant from NINDS, and Associate Director for the UT Southwestern Wellstone Muscular Dystrophy Center, NIH funded.  She is site PI for the MDA sponsored DMD Research Network. Dallas is one of 5 sites funded for 5 years to perform clinical trials in young boys with DMD. She was Co-chair of the panel to develop Common Data Elements for Pediatric Neuromuscular disease, a project of the NINDS. She was a member of the panels that developed CDEs for congenital muscular dystrophy and for SMA. She was also an invited member of a Steering Committee to govern the project for conducting IND enabling toxicology studies for scAAV9-SMN gene therapy developed at Nationwide Children’s hospital in Columbus, Ohio. The IP is now in clinical trials sponsored by AveXis, and she is site PI for UTSW. She has worked closely over many years with several patient advocacy/volunteer groups including the Muscular Dystrophy Association, and Cure SMA, including but not limited to, the International Standard of Care Committee for Congenital Muscular Dystrophies and the DMD Study Group. She has served on research grant review committees, as well as several planning committees and panels, for them and the NIH.

She was Director of Pediatric Neurology from 2004 to 2016, including duties for training residents and mentoring faculty. Dr. Iannaccone has trained/mentored more than 20 pediatric neuromuscular fellows and medical students, many of whom are currently in academic pediatric neurology positions.  She holds 4 pediatric neuromuscular clinics per week, all of which are official MDA sponsored clinics. Nearly 100% of all children diagnosed with DMD/SMA in north Texas are referred to her team either by their primary care provider, another child neurologist, or by parents who read about their program on the internet. Most of the time, they request information about clinical trials at the first visit and invariably indicate that they are anxious to participate.

Education

Medical School
State University of New York - Upstate (1969)
Internship
State University of New York Upstate Medical University (1970), Pediatrics
Residency
State University of New York Upstate Medical University (1971), Pediatrics
Residency
Washington University/St. Louis Childrens Hospital (1972), Pediatrics
Fellowship
Strong Mem Hosp Univ of Rochester (1975), Neurology

Research Interest

  • Duchenne Muscular Dystrophy
  • Neuromuscular diseases
  • Spinal Muscular Atrophy

Publications

Featured Publications LegendFeatured Publications

Natural History of Infantile-Onset Spinal Muscular Atrophy.
Kolb SJ, Coffey CS, Yankey JW, Krosschell K, Arnold WD, Rutkove SB, Swoboda KJ, Reyna SP, Sakonju A, Darras BT, Shell R, Kuntz N, Castro D, Parsons J, Connolly AM, Chiriboga CA, McDonald C, Burnette WB, Werner K, Thangarajh M, Shieh PB, Finanger E, Cudkowicz ME, McGovern MM, McNeil DE, Finkel R, Iannaccone ST, Kaye E, Kingsley A, Renusch SR, McGovern VL, Wang X, Zaworski PG, Prior TW, Burghes AHM, Bartlett A, Kissel JT Ann. Neurol. 2017 Nov
Nusinersen versus Sham Control in Infantile-Onset Spinal Muscular Atrophy.
Finkel RS, Mercuri E, Darras BT, Connolly AM, Kuntz NL, Kirschner J, Chiriboga CA, Saito K, Servais L, Tizzano E, Topaloglu H, Tulinius M, Montes J, Glanzman AM, Bishop K, Zhong ZJ, Gheuens S, Bennett CF, Schneider E, Farwell W, De Vivo DC N. Engl. J. Med. 2017 11 377 18 1723-1732
Ataluren in patients with nonsense mutation Duchenne muscular dystrophy (ACT DMD): a multicentre, randomised, double-blind, placebo-controlled, phase 3 trial.
McDonald CM, Campbell C, Torricelli RE, Finkel RS, Flanigan KM, Goemans N, Heydemann P, Kaminska A, Kirschner J, Muntoni F, Osorio AN, Schara U, Sejersen T, Shieh PB, Sweeney HL, Topaloglu H, Tulinius M, Vilchez JJ, Voit T, Wong B, Elfring G, Kroger H, Luo X, McIntosh J, Ong T, Riebling P, Souza M, Spiegel RJ, Peltz SW, Mercuri E Lancet 2017 Jul
218th ENMC International Workshop:: Revisiting the consensus on standards of care in SMA Naarden, The Netherlands, 19-21 February 2016.
Finkel RS, Sejersen T, Mercuri E Neuromuscul. Disord. 2017 Jun 27 6 596-605
Characterization of pulmonary function in 10-18 year old patients with Duchenne muscular dystrophy.
Meier T, Rummey C, Leinonen M, Spagnolo P, Mayer OH, Buyse GM Neuromuscul. Disord. 2017 Apr 27 4 307-314
Treatment effect of idebenone on inspiratory function in patients with Duchenne muscular dystrophy.
Buyse GM, Voit T, Schara U, Straathof CS, D'Angelo MG, Bernert G, Cuisset JM, Finkel RS, Goemans N, Rummey C, Leinonen M, Mayer OH, Spagnolo P, Meier T, McDonald CM Pediatr. Pulmonol. 2017 Apr 52 4 508-515
Results from a phase 1 study of nusinersen (ISIS-SMNRx) in children with spinal muscular atrophy.
Chiriboga CA, Swoboda KJ, Darras BT, Iannaccone ST, Montes J, De Vivo DC, Norris DA, Bennett CF, Bishop KM Neurology 2016 Feb
Baseline results of the NeuroNEXT spinal muscular atrophy infant biomarker study.
Kolb SJ, Coffey CS, Yankey JW, Krosschell K, Arnold WD, Rutkove SB, Swoboda KJ, Reyna SP, Sakonju A, Darras BT, Shell R, Kuntz N, Castro D, Iannaccone ST, Parsons J, Connolly AM, Chiriboga CA, McDonald C, Burnette WB, Werner K, Thangarajh M, Shieh PB, Finanger E, Cudkowicz ME, McGovern MM, McNeil DE, Finkel R, Kaye E, Kingsley A, Renusch SR, McGovern VL, Wang X, Zaworski PG, Prior TW, Burghes AH, Bartlett A, Kissel JT Ann Clin Transl Neurol 2016 Feb 3 2 132-45

Books

Featured Books Legend Featured Books

Honors & Awards

  • Best Pediatric Specialists
    D Magazine (2010-2017)
  • Speical award from graduating Pediatric Neurology residents for mentoring
    (2010)
  • Member, Executive Council
    American Neurological Association (2008)
  • Texas Super Doctors
    Texas Monthly Magazine (2008-2017)
  • Chair, Section on Child Neurology
    American Academy of Neurology (2007-2009)
  • Neurology Alumni Award
    University of Rochester Department of Neurology (2000)

Professional Associations/Affiliations

  • Academy of Pediatrics
  • American Academy of Neurology
  • American Association for the Advancement of Science
  • International Child Neurology Association
  • Muscular Dystrophy Association of America
  • New York Academy of Science
  • Southern Society for Pediatric Research
  • The Society for Pediatric Research